The Hidden Benefits of Age Related Macular Degeneration (AMD) - It’s All In How You Look At It

When I was first diagnosed with AMD I was introduced to the Amsler Grid, photos of people with blurred out faces, and predictions of hallucinations, absence of straight lines and other tricks my brain might play. All the predictions came true.  Also true was that my attempts to share my growing visual chaos was not found to be an engaging topic by my retinologists.  I have had fifteen plus years with excellent retinologists attending to the status of my retinal health and treatment.  Although I kept trying to get their assessment of my changing vision it was typically met with passing acknowledgement that whatever it was is just what happens with AMD. 
  
AMD support groups seemed to be the answer.  It might have been, but my most extreme visual changes happened during COVID.  The in-person groups were shut down.  The on-line groups were available but were focused on how to regain some level of normalcy with adaptive equipment or for socializing.  Neither of these addressed the spinning wheels, seeing things that weren’t there, not seeing things that were, looking through clouds of red and blue dots as well as the always present blurry and strobing areas.

I went through the five stages of grief (denial, anger, bargaining, depression and acceptance) each time another activity I had enjoyed during my first fifty years  was no longer a joy, or even possible.  I was still working when the ocular migraines began impacting every aspect of productivity.  Limitations on reading, work, hobbies, and general life management activities grew.  This started my first round of working through the five stages of grief.  

My optometrist referred me to an opthalmologist who told me during a series of appointments that I was too young to have macular degeneration and the cause of my progressing ocular migraines was stress.  This was the case until the appearance of the abnormal blood vessels and an urgent rush to a retinologist for assessment and treatment.  Diagnosis was one eye with wet AMD and the other with dry AMD.  Treatment was monthly injections with medications of increasing strength to address my uncooperative retina.  The dry eye was monitored for changes that eventually arrived giving me two eyes with wet AMD.  At this stage my eyes had chosen not to work collaboratively.  I began therapy to retrain my eyes to work together again.  This was a very positive experience.  During this time it was suggested that surgery to lift my brow and eye lids would increase my range of vision.  I had the procedures and imagined all the driving trips my wife and I would take in the upcoming years.   It was then my late blooming retina  erupted after several years resulting in a huge change in my vision. This began again my  working through  five stages of grief.

I was no longer working by this time and had come to terms with many of the limitations I was experiencing to date.  Suddenly a huge change to my vision disrupted any sense of self-sufficiency I had managed to hold on to until then.  I sought support from local agencies serving the blind population.  Home visits, classes, support groups and recommendations of countless adaptive applications and devices were offered.   All with the intent of propping up some sense of competency in my visually distorted world.  I found myself in full resistance mode to all that was offered.  
I understood the value of the services for children and working people and maybe even for myself.  They all can help  adapt to a visual world generally agreed upon to be normal.  But they were not addressing my original and continuing need to investigate not only the physical, social and practical  aspects of my circumstances. but to investigate and express the chaos within my residual field of vision.
   
The conclusion that ”it is just what happens with AMD” justifies all that medical research as well as  adaptive devices and methods provide.  But it also obfuscates the value of considering the potential value of learning how to investigate the unique aspects of one’s visual chaos and how it may contribute positively to their world as well as that of the world of “normal vision.” 

So I’ve  begun to investigate my visual chaos and tried to represent what I found in a series of paintings.  They do not presume to express what others can see or would see if they began their own investigation.  They are intended to let individuals with AMD as well as their family and friends see what they may be experiencing beyond blurred faces and distorted Amsler Grids.  They show my hallucinations, absence of straight lines and the other tricks my brain plays.  My trick is paying close enough attention to the fleeting images to allow myself to replicate them accurately on a canvas.  Turns out some of the enclosed paintings represent my best work.

This resolution is not without precedence.  In his biography titled  Beethoven: The Universal Composer, Edmund Morris discusses the early onset tinnitus and consequences of Beethoven’s ultimate deafness. Instead of a silent world in which to create his masterpieces, Beethoven’s head was filled with chaotic sounds which likely contributed to a dark depression which he eventually overcame and resumed his work.   During his research Morris interviewed a Neurologist who shared that he had been going deaf over the past four years.  Familiar with Beethoven’s work, the Neurologist was able to identify sounds he experienced with his tinnitus with those Beethoven included in his later works.  So, Beethoven’s auditory chaos contributed positively to his work and to the world of great music.